On… Email

It is difficult for my generation to understand how the world worked before emails became a thing. As a 30-year-old, I remember what things were like before email was so prominent, but it was during a time when I wouldn’t have really used it anyway. Despite the fact that many young people now have smartphones before starting puberty, I suspect that few of them are using them to check their emails. Email is a boring medium with minimal intrigue to the Tik Tok generation. They don’t realise how good they’ve got it – having access to relentlessly addictive short-form content, which burns through brain cells like wildfire. When I was young, we had to play with Tamagotchis to get our digital fix, and we’d only speak to each other when we were physically together in school.

Email reminds us of a simpler time when we were grateful for any medium of communication which allowed us to speak without a delay of 3 days or more. Although the letter is often romanticised as a beautiful medium, it is annoyingly slow. It is also error-prone. Letters are easily lost, and they cannot be traced so easily. Emails build on each other, documenting what came before, making it easier to remember what the hell you said when you hurled that email over a few days prior. When reading a letter, you basically have to re-write your letter in your head as you read the response, or it won’t make sense.

Deleted emails go into a ‘Bin’ folder, so one can mull over the decision for a few days. The equivalent action in letters would be burning the paper, which probably feels more cathartic, but is frustratingly permanent. Deleting emails is anti-climatic in comparison. Burning letters contains drama and suspense, whereas you can scroll through your emails ticking little boxes then archive the entire set – how very boring. It is one area where the letter excels in comparison to email. Even setting the computer on fire won’t erase emails. They’re like the Freddy Kruger of communication.

Just as burning a letter is permanent, so are the etchings you make on the paper (assuming you are an adult who uses pens and not pencils). For the perfectionist, writing on paper is like walking a tightrope. Each successful word and sentence formed only adds to the tension, as a single mistake can lead to the undoing of the entire piece. No one likes to see a letter or word scribbled out, but there is no way around it when writing a letter. Your inadequacies are hung in front of your like fairy lights, illuminating the fact that you can’t spell ‘necessary’ correctly, always adding an extra ‘c’ and leaving out an ‘s’.

I created my first email address when I was about 11 years old, and it was something like down-with-kevs@whatever.com. ‘Kevs’ was a synonym for ‘chavs’ when I was younger. Wikipedia defines a chav as “a young person of a type characterized by coarse and brash behaviour.” I was a skater when I was that age, which meant that I used to hang out at different spots around the village all day, being really bad at skateboarding, but still enjoying it all the same. The chavs were seen as the enemy. They were the other group commonly seen hanging around, but we had a good reason to be where we were – we were skating and it was functional – chavs seemed to be there primarily to antagonise others. We were the easiest targets to antagonise, as they were usually older, and had a hunger for thuggery.

One time, when I was out skateboarding, a big group of chavs walked past us and kicked a ball at us. It hit my flip-phone out of my hand and I shouted, “Why the f*** did you do that?” They didn’t like this. Three of them walked over to us shouting some stuff. It was like the hyenas from The Lion King emerging from the shadows in a small pack. One of them grabbed me by the neck with one hand and tried to take the phone out of my hand with the other. I wouldn’t let go. Frustrated, he punched me in the head and walked off. The rest of the group were laughing. I was about 11 and they were at least 16, if not older. From then onwards, I had a potent dislike for people who I classed as ‘chavs’. So, of course, I had to use my private email as a political statement in protest against them. It deeply affected their image in society, and you seldom hear the term ‘chav’ used anymore, thanks to me. My email address single-handedly eliminated the group entirely, and they’re now considered a fringe group at best. You’re welcome, world.

I didn’t grasp the purpose of an email at that age. I can’t remember how much I used it, if at all, but by the time I was actually using my email and signing up for accounts on websites and other services, I realised that I needed to create a new one. My new email address is a variation on my name and some letters – very vanilla, just like an email address should be. No one is hiring down-with-kevs. Down-with-kevs isn’t winning any online giveaways or being put forward for any Nobel Peace Prices. Dan Godley isn’t either, but ‘down-with-kevs’ Godley definitely isn’t. The more successful you are in whitewashing your individuality, the better off you’ll be in the world. Create a boring email and use it to apply to boring jobs so you can earn boring money. Learn to loathe marketing lists, but never enough to unsubscribe from them. Welcome to adulthood – now check your email!

It is truly difficult to imagine how the working world worked pre-email. A hustle of people sat in offices, accosting each other at desks and feigning over endless stacks of paper. ‘Working from home’ was probably considered an oxymoron; something only possible in Sci-fi novels, in the same category as aliens or deadly mushroom viruses that turn people into zombies. Now, most of our working lives revolve around monitoring our inbox in one way or another. Though, there is a disadvantage to email… It leaves a paper trail more permanent than paper even manages. Paper is barely worthy of being included in the phrase ‘paper trail’ with how easily paper can be discarded forever. Paper has the advantage of conveniently going missing when the right people want it to. Most of us have watched a Netflix real crime series covering some untoward case, usually in America, where the key evidence went missing from the evidence room, or where a standard procedure wasn’t followed, but no one seems to know why, as the reports have all gone missing. Emails can be retrieved, to the detriment of corporations and dodgy folk everywhere.

I recently read a piece on Steven Cohen, the man who founded S.A.C Capital Advisors. In 2013, S.A.C was fined an astonishing $1.8 billion for allowing insider trading at the firm. Steven Cohen perpetuated a culture where insider knowledge was considered getting an ‘edge’ over your competitors, both inside your organisation and outside in other organisations. He encouraged the behaviour but recognised that he shouldn’t encourage it, so was notorious in the organisation for not wanting to do things over email. He preferred other, less traceable means of communication, such as a swift whisper in the ear, or a chat over a fancy meal, which probably cost more than the average person’s monthly wage. Still, even Steven Cohen’s despise for email wasn’t enough to stop the emails from doing him damage. Emails exchanged within the organisation were used as evidence in the case against S.A.C. Eventually, he was forced to close it down, but don’t worry, Steven transferred the business to a new name – Point72 Asset Management – and he isn’t doing too badly. In 2020 he purchased the New York Mets. I wonder how he feels about email now… angry, I assume.

My best friend Luke went through a period where he decided that he was going to “bring emails back.” I’d frequently look at my inbox to find an email from him, containing various images off Reddit, and a few updates on his life. He was refusing to use smartphones at the time, but couldn’t resist the cultural drift into the modern age. “There must be a way to share these memes I look at all day,” he must have said to himself, before realising that email could solve all of his problems. Then, my friend George decided to do something absolutely amazing, and shipped his motorbike to Alaska in North America, to then fly out himself, meet his bike, and spend the next year or so riding it all the way south to the bottom tip of Argentina. Along the way, he logged in to a plethora of free Wifi services, ranging from hotels to cafes to superstores etc. Not wanting to use his own email, he decided to use Luke’s. Much to Luke’s dismay, he started receiving a steady stream of “Thanks for registering for the Wifi service” emails. It was a nice way to keep up to date with where George was, but he still receives emails from random establishments in South America and probably has scammers crawling over his emails like digital cockroaches. He has since got a smartphone and has given up bringing emails back. Now he is obsessively wearing dungarees instead.

Despite its shortcomings, I like email as a medium. It is much less obnoxious than its instant messaging counterpart. Email has a natural stagger to it. We seldom send an email and expect to receive a response in a matter of minutes. At best, we give it an hour, and even that is quick. Email is naturally asynchronous in a way that instant messaging is not. Instant messaging seems to tap into some social faculty that is defunct in our brains, one which readily believes that someone hates us if they don’t message back within 5 minutes of receiving our message. Sometimes, if I have something that I think is really important, I’ll send it on Whatsapp, then sit and watch the screen, wondering why I’m not receiving a response, as if that person is physically sitting in front of me and is ignoring me. I have to remind myself that it was my decision to message them and that they have no obligation to get back to me in any timeframe, let alone 1 minute. Email strikes the right balance – you’re there and you can respond, but no one is pressuring you to. It’s all chill – send an email, have a coffee, read a magazine, check your email again – no response; no problem, I’ve got Whatsapp messages to attend to –

“WTF!!!!!!!! I’VE EMAILED YOU FIVE ENTIRE MINUTES AGO AND YOU HAVEN’T RESPONDED. AM I NOTHING TO YOU? DO I EVEN MATTER? DO YOU EVEN CARE ABOUT ME?”

Emails combine the speed of digital communication with the penance of thinking about what you say, not just throwing out whatever you feel like at any given moment, which is what instant messaging services seem to encourage. There is a hint of drama when you refresh your inbox on your phone. A ‘whodunit’ moment, where you wait to see whether your parcel has been delivered, or if someone has added you on LinkedIn. It is a magical few seconds where anything is possible, which is quickly deflated when the only things that appear are marketing materials for a clothes website you purchased a present from 4 years ago. When you’re feeling brave, you can venture into your Junk folder and read about the penis enlargement surgeries, then run away from it again because you’re worried that you’ll accidentally click on the dodgy link. Your inbox is your fortress of communication, from which you command the world. You might have even received a link to this blog in your inbox, which makes it all the more exciting to write. If you didn’t receive it in your inbox, perhaps you should subscribe to it… just a thought…

On… Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch

If you need any more proof that humans can be incredibly stupid, other than all the wars we wage and the flat-earthers etc, then look no further than the names of places. Some of the names we have chosen (emphasis on chosen – real people made these decisions) to give to the places where we reside are absolutely dumbfounding. For proof, look no further than the longest place name in the United Kingdom – Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch. Yes, you did read that correctly, in the United Kingdom, but not in the entire world. And no, you definitely didn’t read the place name correctly. Who could read it properly? Not even 5% of the Welsh population, I’d bet.

I thought that it was the longest place name in the world when I started writing this. But, to my horror, when looking at the Wikipedia page for the village, I saw that it was referred to as the second-longest place name in the world. My blood started to boil. I felt a need to punish my poor keyboard on my laptop by hammering out my frustrations on this blog and dragging my readers through my unrelenting outrage.

Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch is a small village near Bangor. Its name translates to, get ready for it, “St Marys Church in the hollow of the white hazel near to the rapid whirlpool of Llantysilio of the red cave”. Well, apparently it does, but it is impossible to verify for the vast majority of us. If someone came up with it in the modern day, it would be more logical to assume that they spilt their coffee all over the keyboard, causing it to malfunction and start indiscriminately typing letters. But it wasn’t made in the modern day, it was named in the 19th century, which is still far too modern for it to be acceptable.

Quite remarkable how the translation manages to only be 58 characters, yet conveys an entire Lord of the Rings storyline within it. That is actually one thing I am willing to praise it on – as I read the translation, I felt transported to a magical place of mythical creatures and awe-inspiring landscapes. When you consider it in this light, it is actually rather concise, as opposed to being obnoxiously long. Perhaps to the Welsh speaker, it is actually rather beautiful and insightful; a hymn sheet from which the essence of Wales itself is defined – rolling hills of consonants with the occasional vowel, signifying the ‘baaaaaaaaa’ of the sheep that surround the small village.

In actual fact, it doesn’t matter whatsoever how long the names of places are, as it makes very little difference to mine or anyone else’s lives, but it’s fun to get faux-frustrated sometimes. The people who it impacts the most are the locals of the village and the villages surrounding it who have to commonly refer to it. If I lived in the village, I would be writing a strongly worded email to my local farmer/councillor/counsellor (because I assume everyone has to hold a multitude of roles in rural Welsh villages). Most of the character count would be dedicated to writing the name of the village, anyway.

“Dear Mayor/Representative/Neighbour of Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch. I don’t know if you are aware, but our town name is longer than all 3 of our neighbour’s town names combined. If the government paid me for the time that I spend correctly pronouncing it to tourists in the street, I may be more invested in retaining the status quo, but seeing as you have rejected my many requests for this to be made an official job, I detest doing it. I’m not even sure how to pronounce it myself. I just make sure that I sound extra Welsh as I incoherently blurt out a bundle of letters and watch as the minute hand ticks on my watch, ensuring that the facade goes on for a little over 1.5 minutes, but that it never exceeds 2.”

I’m such a bad actor that even my written monologues come off in an English accent. What a pity.

There is actually a shortened version of the village name – Llanfairpwllgwyngyll. It still looks like total nonsense, but it loses most of the comedy and charm when it isn’t 58 characters long, like its long-form twin. I wonder if, upon realising that they did not actually have the longest place name in the world, and were actually second, they shortened it. The endless letters they had to scribe when writing their address finally wearing them out, and the financial burden of paying 5 times more than the average person when purchasing a new driving licence due to the ‘Address’ section. It’s hard to carry around a driving licence when it has to be in A4 size, you know?

The village’s population was 3,107 according to the 2011 census. Of those people, 71% speak Welsh. I’m assuming that still means that 29% of people can’t pronounce their own village name. I’d even be willing to bet that at least half of the Welsh-speaking population in the village also can’t pronounce the name of the village that they grew up in. I wouldn’t even blame them – who could? They’ve been cursed by some old-school Welsh elitist who felt it appropriate to name their settlement possibly the most ridiculous name on planet Earth. But it ISN’T the most ridiculously named place on planet earth, is it? There is another place, far far away, which towers over this fair Welsh village on the podium of place names.

New Zealand holds the longest name of a place on planet Earth. ‘Taumata whakatangi hangakoauau o tamatea turi pukakapiki maunga horo nuku pokai whenua kitanatahu’ is an actual name of an actual place. Now, even as I write this, I haven’t made it all the way through this place name, but I haven’t made it all the way through the one in Wales either. It isn’t the language barrier that is the problem. I actually just get bored after the first 15 characters. We aren’t predisposed to spend 30 seconds reading the name of a single place. Language is a dynamic, living force within us. Without it, we wouldn’t have ascended to the top of the food chain.

Our ability to communicate complex ideas and understand each other is exactly what separates us from nearly every other creature on this planet. We don’t only have the ability to tell each other when there is danger coming, we can explain why it is dangerous, how it is dangerous, that we find dangerous situations extremely sexy, and then we can agree on a safe word before proceeding with the …danger… Quite amazing really. Yet, these places expect us to sit around, learning every painful letter and syllable so we can pronounce the name of a place that we are very unlikely to go to for any other reason than to take a picture next to the sign. Well, I’m fine thank you, darling. The UK actually hosts a number of funnier names that are far shorter, such as ‘Sandy Balls’ in Hampshire, or ‘Shitterton’ in Dorset.

The number of spaces in the New Zealand name also makes it invalid in my opinion. There’s a reason why we don’t reel off sentences and assign them as place names, and that’s because it’s stupid. Want to know what the name translates to? Do you care? Probably not, but here it is: ‘The summit where Tamatea, the man with the big knees, the slider, climber of mountains, the land-swallower who travelled about, played his nose flute to his loved one’. Another Lord of the Rings narrative – what is with these places?

Now, I have since realised that it is often stylised as a single word, so my previous point about spaces is less valid, although still perfectly valid, but I’ve also seen it separated by hyphens, or just split into what I assume are words in the Maori language. In actual fact, it should have numerous spaces in it, because it’s a full sentence, and as far as I’m aware, sentences have spaces, but that might be my limited knowledge of languages hindering me.

Perhaps some languages allow people who name places and make signs to disregard spaces so long as there is a record to be broken. I might email my local council about changing the name of where I live to ‘HomeOfTheHouseWhereCancerDanTheCancerManLivedAfterFightingCancerWithHisPancreasButLostHisPancreasInTheProcess’. At 109 characters, it would be the longest place name in the world, putting my little part of London on the map and encouraging tourism, whilst also catapulting me to minor stardom. There are no losers, only winners. Every time anyone fills in their address in the neighbourhood, they’ll be reminded of my feats against cancer, just like the people of New Zealand are reminded of Tamatea’s big knees whenever they visit Taumata Whakatangi Hangakoau… etc etc etc etc etc.

Come to think of it, we could make the name even more characters… ‘HomeOfTheHouseWhereCancerDanTheCancerManWithTheAverageSizedKneesLivedAfterFightingCancerWithHisPancreasButLostHisPancreasInTheProcess’. Impressive. I can’t wait for the inevitable tourism boom, and interest in just how average-sized my knees really are (I’d actually opine that they are smaller than average, but we’ll see what the press says when they swarm all over the story like flies on rotten fruit).

It’s quite surprising that the length of place names hasn’t become a perpetual pissing contest between smaller places of the world. I picture it going like this: a small village realises that it has a boring old standard name, so changes it to a longer, sillier form, and then earns a place on the podium. Within 5 years, we’ll have a place name hitting the 1000-character mark. It sounds like hell, but it could be interesting. Still, there are some solid entries in the current list. Number 10 in the list is ‘Mamungkukumpurangkuntjunya’ in Australia, at a measly 26 characters long. That is very beatable! It still looks absolutely ridiculous, but it is a lot less characters than the top entry which, as we know, is 85. One advantage that 10th place has over all of the others is that it translates to ‘where the devil urinates’. Ok, Australia, you’ve made it onto the bucket list, alongside Sandy Balls and Shitterton. Well done.

Yet for all of my complaining and sarcasm, the reason that I know about these long place names is because of a teacher that I had in primary school who could pronounce the entire of Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch from memory. It was very impressive. Granted, I wasn’t in a position to know whether she did it correctly, but she did it with confidence, so I always believed her. I was also under the age of 10 when this happened, so was more than likely susceptible to being duped, alongside the rest of the class who also stood in disbelief as she recited it back to us. I’m pretty sure I saw some of her hair turn grey during the process. By the time she finished, the year had actually concluded, and I found myself getting ready for secondary school. She’s probably only had time to say it another 3 or 4 times since then. Hopefully, she has found some other things to do with her time.

So, this isn’t a post which is particularly in favour or anti-long place names. It is a post to encourage you to look into niche topics because there is always plenty of fun to be had in diving into them. I can’t remember what my life was like before I learnt of where the devil pissed, but I’m sure it was a little less interesting.

Goodbye, Portner in Crime

The Port, Taken Shortly After It Was Put In – November 2021

You ever wonder how deep you could sink into nothing at all?

There are always multiple ways to frame situations in life. When the oncologists told me straight after my first ‘all clear’ scan that I needed to have my chemotherapy port removed from my chest, I could have chosen to take this as a positive. Surely they wouldn’t be requesting it to be taken out if they had any major concerns about my health. A few people I know have responded with this logic upon learning that the oncology staff want to schedule taking the port out, and I’m happy for them. I, however, am not one of them. To me, them telling me that my port can be taken out is them alluding to the fact that if the cancer comes back, I’m totally fucked and the port won’t make any difference whatsoever.

Having a port in your chest also comes with some increased health risks, so I think the actual reason they take it out is far simpler and more straightforward – it is just the process. If you aren’t on active chemotherapy, and the port is not being frequently ‘accessed’ (that is medicalese for a needle being plunged into the port in your chest, before pumping things into it; they aren’t small needles either), then dry blood can cause issues with it, causing the line to become useless. The device also increases the chance of a blood clot occurring, but only by a very small percentage. When I got it put in, the nurse putting it in told me that in other countries they don’t have a policy stating that they need to come out again once inserted and that they tend to leave them in for the rest of that person’s natural life. That sounds lovely. I bet those countries have more sun than we do in England, too.

To give some context, in case anyone reading this feels like they didn’t get the memo on what these ‘ports’ things are… A ‘port’ is a Portacath. It is a small silicone device that is inserted under the skin in the chest, that is connected to a line. When they put it in, they insert the line into a major vein in the neck, running it under the skin from where the silicone device is, north of your chest and into the vein. You can actually see it through the skin.

They are put in with local anaesthetic administered to the neck and chest area and I can confirm, it is pretty uncomfortable. Nowhere near as uncomfortable as having an endoscopy, but this isn’t Medical Procedure Top Trumps. They’re all terrible in different ways. I wrote an account of the procedure in an old post, actually, so my more dedicated and long-standing readers may already be aware of that, but it was ages ago. I’ve also written about my experience of having an endoscopy too, but that is a memory that is deeply entrenched in a dark corner of my psyche, and only comes out to play when my mind feels like re-traumatising me in the form of a bad dream or a rough mental patch. I have spoken to the odd person about their endoscopy and they’ve told me that they didn’t find it too bad… Although I respect these people tremendously, they really do need to have a mental evaluation to make sure that they are Ok. Despite an endoscopy being required to diagnose me, which makes me enormously grateful for its existence, it is, essentially, a torture method. I don’t fully remember the whole thing due to the sedative they administered to me before starting, but I remember black bile leaking out of my mouth, and the sensation of choking on my own sick whilst I struggled to breathe. Where else would you hear those kinds of things? Correct – a prisoner’s account of being tortured!

I was supposed to have the port taken out straight away once I was told that there were no signs of cancer anymore, back in February, but I asked if they could wait until after the next scan. It felt like tempting fate to take it straight out, and I was suspicious that the staff knew something that I didn’t. Why were they so sure I wouldn’t need it again? Am I actually fine now? No one will tell me I’m fine – I keep being told that I have to “live with cancer” for the next 5 years. Turns out, oncologists just really hate telling people with pancreatic cancer that they might survive, and like to adopt phrases such as “it’s a really difficult cancer.” I know that it’s a difficult cancer – I had it / have it / am living with it / am sick of thinking about it – I’ve seen plenty of things alluding to the difficulty of this cancer. I don’t actually know where I’m at with it. But I’m definitely living with it in some way – it won’t leave me alone.

Well, today was the fateful day. The port was coming out. I had already rearranged the appointment once, as I received the call about scheduling it approximately 10 seconds after leaving the oncologist’s office after being given my scan results. It was in that very meeting that I had reminded the oncologist that it needed to be taken out, so either the schedulers are mediums or the oncologist pressed his panic button under the desk, which must flash an emergency light in the scheduler office, allowing him to bash out my name in morse code for her to then find me on the system and call me to make the appointment. They also might just have had a working phone system, and the oncologist called them straight away, to ensure that it was scheduled before anyone forgot. It was probably the Morse code theory.

I chaotically said yes to whatever words came out of the scheduler’s mouth. Then, upon hanging up, realised that the time I had scheduled did not agree with my work calendar whatsoever, and that I’d need to reschedule. The problem was, this was Thursday and I was off work on Friday, and I’d just received some positive scan results. So I did what any respectable person would and waited until Monday to do anything about it, just over 24 hours before my appointment time. They were very accommodating, luckily. They had every reason not to be.

I’ve learnt to be a certain way before these types of events. It’s somewhere between tentative and apathetic. The resulting state is one where I waltz through the day or two before the procedure, never fully thinking or worrying about it, but never not thinking or worrying about it too. It is an ever-present threat which lodges itself in the brain. I know it won’t hurt, but it isn’t that which causes me to linger on it so much. Who wants to have their chest cut open and a device, which is connected to a major vein, yanked out? The same group of people who think endoscopies are bearable – of course. The whole thing just gives me the ick.

Getting it out is a different affair to having it put in. When it was put in, a plastic piece of material was used to stick the side of my head to the table facing the opposite way from the procedure. This time, a plastic pad was stuck to my chest, allowing the nurse to operate whilst keeping it as hygienic and mess-free as possible, but I could have, if I wanted to, picked my head up off the table and looked straight at what was happening just 10cm from my head. Of course, I didn’t, as that would have been an instant pass-out for a weakling like me. But I could have, and that felt empowering, when I eventually thought about the fact that I could have done that, half an hour after the procedure had finished. I didn’t have the guts to think about it during the procedure – I was bracing for dear life.

Last time, when it was inserted, I had to have a series of injections that were really painful to kill off the feeling in the area, but this time it was sprayed with something. Initially, it gave a cool sort of sensation, which then advanced to a sting, then, nothing. Perhaps the nurse injected something afterwards, but I didn’t feel it if she did. What I did feel was a couple of sharp twinges early on deep in my chest, shoulder and arm. I couldn’t tell what she was doing, but at one point, one of them made the right side of my body flinch involuntarily, and I started to profusely sweat. I let out an awkward sound, and she confirmed that I couldn’t feel any pain, only some “disconcerting poking”… It didn’t make me feel better. She was doing her best to keep talking to me, and I was impressed with her commitment to trying to distract me, but I was laying back with my eyes closed at this point, and wasn’t really responding.

After 5 minutes or so, most of the uncomfortable feelings had gone. I assume that she had done the gross part at this point, and was just doing the admin work – the stitching of the wound and whatever other things she fancied doing whilst in there. Taking a look at my tattoos from the underside of my skin, dropping a little M&M in there maybe – disinfected, of course. The whole thing probably took 20 minutes max. I sweat so much that I felt concerned about it. Should I be embarrassed? I made some awkward remark about it. “I sweat more during that than I have for the rest of the year so far,” I mocked, trying to address the elephant in the room, and she peeled off the material that was sprawled over the bed. During the mop-up chemotherapy, I was sweating so much that I started wondering whether its purpose was to try and sweat the cancer out rather than kill the cells themselves. It is still a running theory of mine.

Now, as I sit on the train back to London writing this, the area does feel quite sensitive when I move it. I’ve taken paracetamol, which I’m convinced doesn’t do anything, despite having experienced what the liquid form of it does when administered directly into the bloodstream – it’s a totally different drug when it is administered like that. The tablets don’t seem to do anything. I’ve got a bandage on it which has to stay there for a week; once that is over, I get to take it off and pull off the paper stitches – fun! Something to look forward to, I guess.

I had a bit of a strange weekend mentally. Friday night I had a minor panic attack in bed, and tried to wake my wife up, but she was too asleep to care. Totally fair enough, it was 01:00 in the morning. I managed to navigate it, but it was a little weird. All of a sudden, as I lay there trying to fall asleep, I started having some really dark thoughts. It genuinely felt inescapable and for a second, I had no idea what to do to make it better. I grabbed my dog, Lucy, and held her in my arms whilst she absently groaned at me. She nuzzled her head into my armpit as I lay on my back. It made me feel a little better, and I reminded myself that I’ve been through a lot worse over this past year. I’m actually cancer-free right now – which is an amazing place to be. It is a place that I never thought I’d get to this time last year when I was receiving my end-of-chemotherapy scan results, and the surgeon was telling me that he didn’t think he would be able to get rid of the tumour.

Holding Lucy did help eventually, and I fell asleep. That temporal period of panic has stuck with me, though. It frustrates me that I have more episodes like this now I have some semblance of hope, as opposed to when I was in the middle of treatment and felt utterly hopeless. Trying to move into the rhythm of having a normal life is just difficult; I don’t know why, but it just is. I still don’t truly believe I’ll actually survive. I’m sure it’s to do with that. I have to force myself to acknowledge that it is a possibility now, even if it is still an uphill battle. How long can I spend worrying about something that hasn’t even happened? I find myself diagnosing myself with a reoccurrence only a few weeks after a clear scan, whenever I feel any symptom whatsoever. I’ve been moved onto 6-month scans. Surely that’s a good thing, even if the oncologists don’t specifically say so?

The weather is getting better and I have a busy few weeks ahead, so there is plenty coming up that will help to distract me, it’s just about maintaining the energy levels to enjoy it all and not totally crash. Now I’m portless as well as cancerless, maybe I’ll start to accept the distance that is forming between me and my diagnosis, rather than longing after it in some weird, backward way, where I feel more vulnerable with the more that time passes. The surgeon’s voice keeps ringing in my head loud and clear – “Not many people beat stage 3 pancreatic cancer,” I remember him saying. I too easily forget the other thing he said to me – “you have gotten this far against the odds. There’s no reason to believe that you won’t continue to beat them.”

On… Memory

Josie, me and Keiran and Glastonbury – 2019

I’ve always had a bad memory. I can’t remember if it was bad when I was really young, because I don’t remember being really young, but I’m sure it’s been a problem for a while. When I hear people say that their first memory was when they were 4 or 5 years old, I assume that they’re lying. I’ve even heard people say that they have vague memories of being even younger than this, but I outright refuse to believe such nonsense. How can someone else remember being an age where their entire diction was no larger than 200 words, yet my first memory is of being 28 and being diagnosed with cancer? But in all seriousness, I think my first memory is probably when I was about 10. Even that might be generous. It really is that bad. I have vague feelings that I remember things, but they don’t translate into anything useful. I think I remember going to school in Hemel Hempstead when I was probably 5 or 6, but if I’m being honest with myself, I think I’ve just seen a picture of myself from around this time, and am misinterpreting my memory with the scene in that picture.

A few years ago, I read a book (I can’t remember what book, and that isn’t another joke) written by the man who holds the world record for reciting the most numbers of Pi accurately from memory. It I remember correctly, which I probably don’t, it took him over an hour of standing at the mic and calling out number after number before he got one wrong. The story blew my mind. Not because I was impressed that someone could do that, although I was quite impressed, but because it was even a thing. If your memory is that good, shouldn’t you be using it for something useful? Why is remembering Pi useful? Why is creating an entire event around it useful? I guess not everything has to be useful. If I could remember something that well, I’d want to make a spectacle of it. I bake cake after cake at the minute and I’m diabetic, so I eat very little of any of them, feeling too guilty to do so. That isn’t very useful. It’s fun, though. He probably thought reciting Pi was fun… It probably is fun when you can do it that well.

Fortunately, we don’t have to remember anything these days because we have Google. For example, I just Googled ‘Book man recite most digits Pi’. If I waffled like that to a stranger in the street, they would assume that someone had been filling my water bottle up with Absinthe. Luckily Google understands me, and according to its limitless knowledge, the book I read was Born On a Blue Day, by Daniel Tammet. I can hardly remember anything about it now. It begs the question – was it a total waste of time to read it if I don’t remember anything from it? Well, hopefully not, as I don’t remember most of the books that I read. Additionally, I don’t remember a lot of things that I have done in my life. If everything I don’t remember is meaningless, then I am notionally disregarding 99% of my life on the grounds that I don’t remember it, so it was irrelevant. Even people with phenomenal memories, like Daniel Tammet, would be disregarding a good 90% of their lives based on this principal, so I guess remembering something isn’t what gives it meaning. The important things probably directly influence you, in a way that is material and tangible, but everything else just helps to shape you in a more subtle way.

That leads me to wonder whether there are things that my brain has gone to great lengths to forget. Sigmund Freud would have emphatically told me that it has, as has everyone else’s. He is a little more successful than I am, so I would tend to agree with him. With regards to one of his more controversial ideas, the Oedipus complex, I’d be a little more cautious to agree. That theory seems to have not stood the test of time quite so well. Sometimes we reject something because it is too truthful, and could present us in a particularly bad light, one that we don’t like to admit about ourselves. Our sense of self-preservation kicks in. We may struggle to accept criticism or, upon hearing someone say that we are a depressing person, for example, we may kick back, telling them that we couldn’t possibly be a depressing person, because we hate depressing people, as if that argument is a tour de force which cannot be disproven.

I can think of times that I have had some negative trait pointed out to me that I have displayed, a trait that doesn’t necessarily agree with the image I have of myself. That has lead me to reject it and tell the person that they’re wrong about me. I’ll then think about it all day, obsessively playing scenarios from throughout my life out in my head, and thinking about how it actually supports what they have said. All of a sudden, the things that I am remembering all concur with what the person said, and I’m forced to admit something that I don’t like about myself. I hope that it has had enough of an impact on me to make me change, and I’ll frequently assess the way that I behave in situations against that critique, but over time I lose focus, and perhaps don’t improve as much as I’d like to. Other times I have, though, and I’ve managed to curtail a behaviour enough that I think I manage to reform it for the better. Other times, I really don’t believe that this person is correct, and I find amusement in their suggestion.

The problem with this method of self-improvement is that memories are notoriously difficult to accurately recall. How we feel during that second that we are thinking about the memory taints it, and our interpretation of it can change from moment to moment, day to day. A memory of a time spent with a significant other can bring plenty of comfort for years. Then, the breakdown of that relationship may cause that memory to taint, and it can be difficult to remember it without feeling a lot of sadness, anger, regret. Sometimes it takes years to look back on it with any fondness at all. Sometimes we never do again, and it will forever hold a negative place in our lives. Those happy memories haunt us, becoming the opposite of what they once were to us. If this is true of the memories that we are conscious of, who knows what becomes of the memories that we’re unconscious of, but that continue to impact our every thought, reaction and motive.

What makes someone like Daniel Tammet’s memory so good, and mine so bad, though? I have an idea of what may have negatively impacted my memory… As a teenager, my modus operandi when “socialising” was to drink myself into oblivion. “Pacing yourself” was a concept that I was aware of, but only came into my life in the form of a flippant joke, as I downed another can of something and became slightly less aware of how much of an idiot I probably looked. Sure, there were a lot of fun times, but I seldom remembered them. They live on in tales told between my friendship group, and I vaguely recall tiny snippets of these memories, probably constructed more from the narrative told than the experience itself. This was my approach to drinking for the best part of 8 years. It was a hard cycle to kick. In some ways, I think I was an alcoholic, but the fact that I established a healthier relationship with alcohol perhaps suggests otherwise. I assume that a true alcoholic can never have a healthy relationship with alcohol. Perhaps it is dependent on the personality type, or the specifics of the abusive relationship with alcohol, or a combination of those factors, and more. What I do know is that my memory is terrible, and I’m willing to bet that excessive drinking played a part in that.

Yet even my memory, plagued with blank spots and steep cliffs, will trigger upon smelling a certain smell, or hearing a certain word. Sometimes I’m not even sure what the memory is, I’m just sure that whatever triggered it means something to me. It’s a strange sensation. I wish I could think of an example, but that would contradict my point. Perhaps it is a familiar smell, one that I smelt during some significant event, but it isn’t enough to trigger an actual memory, it just conjures some emotion or feeling. There are fewer things more powerful than it. It is like that scene at the end of Ratatouille, when the food critic asks the mouse to make a meal for him, and the mouse chooses to make him ratatouille, a standard dish, and one that is not necessarily impressive on its own. But, upon putting the food in his mouth, the food critic remembers being a young boy and eating his mum’s ratatouille, and it brings a tear to his eye, then he announces that this mouse does indeed belong in the kitchen, against all health regulations, because he made a damn good ratatouille. Sure, why not. The central point of the scene is poignant, though. Smells and tastes can evoke a strong feeling. So strong that fast food companies apparently create the smell of their food in a laboratory; it sounds made up, but the smell seems to travel a fair distance from the restaurants, and it does seem to have its own defining personality, one that reminds us of all the other times spent there – with family and friends, through hard times and good. I don’t fall for it, but my memory is so bad that I don’t remember any good times in McDonalds, so I don’t fall for their trickery. There are other smells which evoke powerful memories for me.

The smell of wood being cut really reminds me of my grandad. He was a carpenter and had a cellar filled with big machines and devices used to carve wood. When I was in primary school, we made a model of an aircraft carrier out of wood together. The detail in the model was impressive, with little gun barrels poking out of the sides of the ship. They probably don’t even have turrets there, but I think my grandad was letting me be the creative director on the project. He clearly did all of the hands-on work. After finishing it, we painted it all a monotone blue colour, with no other detail whatsoever, and it looked a little bit unfinished. His field was carpentry, and it held a clear boarder for him. Decorating was a different department.

The smell of incense reminds me of going clothes shopping when I was about 10 years old. At the time, I was obsessed with skateboarding. My dad used to take me and my brothers to a shop called Dazed (I think that’s how it was spelt), and the shop always smelt strongly of incense. I didn’t know what the smell was at that age, or for a long time afterwards. I’m not sure when I eventually smelt it and made the link, but it was years later. “THIS SMELLS LIKE DAZED,” I shouted out once whilst at a friend’s house, after he started burning some. They didn’t have a clue what I was talking about. The sentence came out of my mouth almost involuntarily, and I had to explain to a small crowd what I was talking about, realising as I spoke that it was far more interesting to me than it was to them, or anybody… a little bit like the topic of this post? I’ll make next week’s extra stupid, I promise. If I remember…

My sister Josie claims to remember everything. She will constantly recite back things that we did when we were younger together. I respond with a blank stare, reminding her that I don’t remember anything from 2018, never mind when I was 8 years old. I’m convinced that she just has a more creative mind than mine, and she simply believes that a lot of these things happened because she can see them in her mind, but that they didn’t actually occur in real life. Perhaps that is me being cynical as it is so hard to envision such a world where one actually remembers things, when the one I am used to couldn’t be more different. We’re from the same family, after all. Shouldn’t we have the same propensity for remembering? I guess not. I can’t even remember why I started writing about this in the first place…

On… Commuting

Early on in my career, I realised that half of the battle in staying happy in life is learning to enjoy your commute. If you find peace during that 45 minute journey, where you’re sat in stand-still traffic or pressed up against the inside of a train door, then you can do anything else in life with vigor. It is the key to inner happiness. When we think of Monks, we assume that it is their connection to their God and their studious nature which brings them inner peace. Although this is a nice theory, I believe it may be wrong. Monks spend their lives in monasteries, where commuting is a dystopian concept. It isn’t a coincidence. They’re probably unaware of the entire concept of ‘dystopian’ with all that peace and tranquility. To some of us, a monastery seems like a concept reserved for dystopia, but I’m sure everyone agrees that the lack of commuting is anything but. Perhaps I should become a Monk, come to think of it. Na. I like buying things too much.

‘Commuting’ is an elastic word. Although it is commonly used to refer to the regular act of leaving one’s home to get to one’s place of work, it could, in theory, refer to any journey that is made regularly. If I had regular piano lessons, and I travelled there every Saturday at 08:00 to arrive at 09:00, could I refer to this as my ‘commute’ to my piano lesson? I might. It might even be acceptable to describe it as such. It is certainly acceptable according to the Wikipedia page for commuting, where the following is stated:

Commuting is periodically recurring travel between one’s place of residence and place of work or study, where the traveler, referred to as a commuter, leaves the boundary of their home community. By extension, it can sometimes be any regular or often repeated travel between locations, even when not work-related.

Notice the use of the word ‘even’ in that paragraph? “…EVEN when not work related.” What exciting lives we lead in the modern world. It makes me think of the interview with then british Prime Minister Theresa May, where a reporter asked her what the naughtiest thing she had ever done was, with the slightest hint of sarcasm in her tone, but still said very professionally. Theresa May responded in a babbling fashion, trying to buy herself time to think of a realistic yet relatable answer – “Oh goodness me…. Erm, well I supposed the… Gosh… I’m not sure… No one’s ever perfect are they… Well, I have to confess, when me and my friends would, sort of, run through the fields of wheat…well, the farmers weren’t too pleased about that.” You can’t watch it without covering your eyes and cringing. I think Theresa May might have written the Wikipedia page on commuting, based on her response that day. I’m surprised it didn’t come up after that question was put to her.

Reporter: “So, Theresa, what is the naughtiest thing you have ever done?”

Theresa May: “Well, erm, I guess I’ve, erm, been a little aloof with my siblings in the past. I EVEN described my journey to my brother’s house for Sunday dinner as a ‘commute’ because I was doing it every week. He didn’t appreciate that.”

After she said it, you could sense the world collectively groan back at through their TV screens, before immediately changing the channel. It would have actually gone down better than what she said – at least it would have hinted at the fact that she had a sense of humour.

But I am not talking about the type of commute where you frequently make some nondescript journey. I’m talking about that forced journey that you make at the worst time of the day, during rush hour. When everyone in the world looks miserable because they got out of bed earlier than they wanted to, to go to a place where they’re constantly scrutinised on their ‘performance’, whilst making someone else a lot of money, which they only receive a small percentage of in return. That morning slog to your place of work.

If you’re driving a car and you’re unfortunate enough to meet another person’s glance as you’re sitting in traffic, you see the same misery that is painted over your face in theirs. You both quietly acknowledge it, before quickly looking away and pretending that you aren’t still wondering if they’re looking at you. What else are you going to do? Think about work? Gaup at another car? There’s nothing better to do. Just stare forward and try to think of nothing.

In London, on the underground, making eye contact with someone is considered assault during rush hour, and it is to be avoided at all costs. There are reports of people actually turning to stone upon making eye contact with each other on the tube in rush hour. I haven’t seen it happen myself, but I’m not willing to find out if the stories are true or not. Here is a little run down of my daily commute on the tube…

As soon as I enter the train carriage in the morning, I run for the only seat that is still available and throw myself on it. Then, I take out my book from my bag, ensuring that the only place I look is down, before opening it up at any page at all (I don’t care where, so long as I am too busy to engage with anyone around me), and that is where my gaze stays until it is my stop. Then, I put the book in my bag, immediately produce my phone from my pocket, check my emails quickly as the train pulls into the station and, when it stops, I finally look up, stand up, and leave the train. A sigh of relief involuntarily leaves my mouth, and I start to shake the hands of every person around me whilst staring them straight in the eye, like a politician, congratulating them for successfully making it through another commute. Then I realise that I have a 20 minute walk to my office from the station, which means that my commute is technically not over yet. Horrified at this realisation, I repent to the commuting Gods and ask that they forgive me for my transgressions, for daring to look another commuter in the eye. Then I nervously run to my office, purposefully barging into people in the street to make sure that they know that I am a commuter and I will damn well act like one, with my eyes fixed on the pavement in front of me and a total disregard for anyone or any thing that isn’t me. Later, when I get a notification from my bank telling me that London Underground have charged me for the journey, I am reminded that I actually pay to do all of this, and the indignation weighs heavy on me for a while. Then I get the tube home and forget about the whole thing. Same again tomorrow, I guess.

Commuting seems to drive people clinically insane. When I used to get the tube from London Bridge, in central London, to Canary Wharf, I would always take the Jubilee line. If it is running to schedule, there is a train every 2 or 3 minutes. It is quite impressive. Despite this, sometimes I would be walking towards the platform, where a train would be sitting with people alighting from it, and I’d accept in my head that I’ll just get the next one, as there are too many people around to allow me to sprint at it, and there will be another train in 2 minutes anyway, so why would I? Next thing I know, Tom in the Blue Suit is bursting past me from behind, as if this train was the last train to heaven and if he didn’t catch it, he would immediately be damned to the train to hell and nowhere else. I’m sure in his head he has a scene from an action film playing, and as he dives towards the train doors, the bell ringing out to signify that the train is going to leave and doors are closing, he thinks he has made a fantastic decision. Then, as he dives through the closing gap, the entire world probably goes into slow-motion a la Matrix style, as he narrowly slips through the gap, the door closing on the heel of his back foot. “Please do not obstruct the doors,” says the train driver through the tannoy, in a frustrated tone. Tom pulls his shoe from the gap with great effort as the doors angrily clap together behind him. He then smiles to the hordes of people crammed into the train, some of which he has just shoulder barged on his way in, then continues to look down and assume his position as unassuming commuter #235987245897349683045892034729845938460395863. Well done, Tom, you saved yourself 2 minutes. Enjoy getting to work earlier you absolute moron.

Of course, the recent wave of Working from Home has seen a decline in commuting. Whether working from home (stylised as ‘WfH’ or ‘WFH’) is a positive thing or not seems to split opinion. I feel like most people that I know are in favour of working from home, but I know a few people who are ardently against it too. In my experience, the answer seems to be in balance. Covid-19 presented us with a rare opportunity where we were forced to stay in our homes, and work from them all of the time. We had to do everything from them. I even had to do my family Christmas from my own home, via Skype, because Boris Johnson announced another lockdown about 2 minutes before I was leaving to get the train home for the holiday. Bah humbug.

Commuting became an ideal of the past, a distant memory of a world not plagued by… plague. One where it was common to see groups of young professionals outside the pub at 18:00 on a Wednesday, armed in suits and drinking beers, and where it was a given that we’d all be travelling into work the next morning, assuming it was a week day, but we all thought nothing of it. We all had more stamina then, and going out for mid-week drinks was part of the job. How life has changed.

Working from home was a benefit that I had experienced at my old job, but it was something that you had to beg for, and have a ruddy good reason for asking. Then, the pandemic happened, and all of a sudden the world required everyone to WfH all of the time, or risk death. We all started judging each other on how willingly we wore masks in supermarkets. I remember someone pointing out that all of the youths that used to love wearing masks in public were now refusing to wear them in an act of defiance, an apt observation which I thought of every time I saw a group of bustling teenagers in a shop, not wearing masks and staring you out for daring look in their direction.

I now go into the office twice a week and I have to say, it is quite enjoyable! It is nice getting out of the house, putting on some nice-ish clothes, and seeing people face to face. The whole thing feels quite novel. Yet, now there is more of an expectation on us to do so, the office is the worst thing ever again. There are no winners. Humans are destined to be unhappy – that is my takeaway from it all. If there is something to be dissatisfied with, we’ll find it and we’ll milk it dry. When we were working from home, we wanted more money to cover the extra heating bills, but now we’re back in the office, we begrudge having to pay the money to commute.

But I have lots of positive things to say about the pandemic AND about post-pandemic life. The pandemic actually presented me with a few rare opportunities, of which I will forever be grateful. I was living in central London when it hit. During my long runs on a Saturday, I’d run along the Thames path right next to the river, through central London and around Southbank. There was a time that I was running over the Millenium Bridge, the bridge which crosses the river next to The Globe theatre and leads you straight to St Paul’s Cathedral, and I couldn’t see a single person anywhere. It felt like I was in a zombie film. No tourists, no commuters, no street performers. Just me, the Thames, and an eerie sense that the world was ending. The world wasn’t ending. In fact, there were images of fish in the canals in Venice, and wild animals venturing into the towns in Wales… the world was actually doing better and we were the problem all along – who knew? But it was a peaceful time, and I’ve never experienced a London like it in all my time of living here.

So, I’ve tried to make something of my commute, as it is the only thing standing in my way of enjoying my 2 days in the office… I try and use it to do something useful. I’ve been reading through all of Patrick Radden Keefe’s books, an investigative journalist who writes incredible non-fiction, but has such a smooth writing style and finds such interesting topics to talk about, that makes you wish that the commute would never end. I’ve started writing on my commute on my phone too, or I’ll respond to a bunch of texts that I’ve been sitting on (apparently, a side effect of having had cancer is that you get really bad at doing life admin). I feel like it is reforming my opinion of commuting. It does help that where I live now is a little quieter on the commute, and I usually get a seat… I wouldn’t be spinning a positive ending on this if I still lived in London Bridge, that’s for sure. And I stand by what I said at the start of this – if you can find a way to enjoy your commute, you will probably be a much happier person overall. I feel like I’m moving past a notional concept of enjoying my commute, though, which is what I used to have, and am actually starting to enjoy it for real. If I see Tom in the Blue Suit, though, I’m going to trip him up and laugh to high heaven as his train departs the station without him!

Cancer: When “Young” Doesn’t Equate to “Fun”

At My Best Friend’s Wedding – 08.04.23

I originally wrote this with the intention of sending it to a few media outlets, but I never did and it has been sat in my drafts for a while, so I thought I’d just post it. Enjoy!

The English language has some interesting colloquialisms, especially around the concept of being young. Many of them aim to bestow wisdom upon the subject, such as the popular idiom “youth is wasted on the young”. Personally, I find the risqué ones more engaging, like “young, dumb and full of…”. I won’t finish it off, no pun intended.

I feel strange describing myself as young. Not because I don’t feel young, or even that I don’t consider myself to be young, but because I’ve heard so many nurses, doctors and oncologists use the word to describe me, that I have started to associate it with my diagnosis. It is usually said in a tone of pity with accompanying wide-eyed sympathy. People are nice, and I’m grateful for that, but I’m still an adult who craves a more complex response than wide-eyed pity. For I was diagnosed with stage 3 pancreatic cancer at the ripe old age of 28, placing me firmly in the Adolescent and Young Adult (AYA) category of cancer sufferers.

To qualify for this coterie, you must be between the ages of 15 and 35, and you must, of course, have cancer. We don’t let cancer muggles sit at the table with us, just like we don’t let grey-haired sufferers of the malady have a piece of the pie either. It is our way of establishing exclusivity in a club that no one would ever voluntarily join. Previous cancer sufferers are welcome too, seeing as they can contribute to the woes of emotional turmoil that come with a cancer diagnosis in your youth, but that is it. Ok, perhaps those bereaved due to an AYA person dying of cancer can also come along. Perhaps they can invite their parents too. And their dog, who probably misses them dearly. But that’s it – period.

How it works if your age is borderline, or if you cross the bracket during your treatment, I’m not entirely sure. Let’s say that I was 37 years old – would I be turned away from the focus groups? Would my submissions to the AYA magazines be printed off by the editor, only to be scrunched up and thrown into the bin? I’d hope not. Lucky for me, I qualify, being the ripe age of 30 now, and I have a few years left before I must consider my maturity into the next category of cancer sufferers, whatever that is.

I’ve been navigating the world of being ‘young’ with cancer for over a year now. Things have turned out relatively well for me. The first seven months of chemotherapy showed positive results, shrinking my tumour by about a third. Despite this, I was told that the progress was unlikely to be enough for my tumour to be removed in surgery. Due to my age and health, the oncology team still passed my case over to the specialist surgeons for review, in hope that something could be done, even if a full removal was not possible.

The universe had other plans. I woke up following my surgery to the news that my tumour had remarkably been fully removed, but that they had to also take out the entirety of my pancreas. If that wasn’t enough to process, a few other things were removed too – over half of my large intestine, gallbladder, spleen, bile duct, some of my stomach and, for good measure, some of my liver. Two major arteries were also reconstructed, a sentence which still doesn’t mean a lot to me; it conjures up images of a surgeon laden in green overalls but with a yellow hard hat on and a hammer in hand, which emphasises how immature my understanding of surgical procedures is. I wish to keep it that way.

The recovery was harrowing. I wondered if I’d ever feel normal again, especially now that I am insulin dependent (AKA Diabetic). Nearly a year on from the operation, I do feel much better than I thought I would, but everything is very different. My life is punctuated by random abdominal pain and when I walk, I feel tension in the area around the scar, which intricately snakes across my abdomen. It feels strained. Most of the time I manage to forget about it, but it does bother me from time to time.

Sometimes, after meals, the skin around the scar bulges out, making my stomach look malformed. It can feel particularly uncomfortable when this happens, and it is the primary reason that I am slowly adjusting my diet, eating less of the foods which seem to make this happen. Of course, it is mainly carbohydrates, which is easily the best food group, but as I am diabetic, I already view them with suspicion, so it is probably for the best. Carbohydrates are, after all, trying to kill me. As the body breaks them down, they cause the blood sugar levels to increase. When I eat them in the evening, I find my diabetic alarm going off more frequently on my phone throughout the night. It is a sharp alarm noise and it is awful to wake up to. I’m essentially flipping the Pavlovian method on its head and treating myself to not eat carbohydrates in the evening by being woken up by a piercing alarm sound all night. It is slowly working, but carbohydrates are a hard habit to kick. Don’t even get me started on not eating chocolate in the evening.

One advantage of the scar is that getting it out has become my new party trick. It used to be my ability to put the entirety of my fist into my mouth, but I’ve retired that move. I was once at a party where someone did a backflip in front of a room of onlookers, who all burst out into cheers and applause as his feet landed safely back on the ground. “That’s a real party trick,” I thought to myself. I like to think that these days I’d give backflip guy a run for his money. A scar as big as mine is adaptable – one day I was hit by a double decker bus, the next I was attacked by a shark. The scar is all the proof I need. It probably wouldn’t erupt a room into jeers, though. It is more in the ‘interesting’ category as opposed to ‘enthralling’. Doing a backflip is interesting and enthralling… It really is the ultimate move. I don’t attend parties anymore, so I guess it doesn’t matter.

Of the things I’ve learnt from going through a cancer diagnosis, the most prominent lesson has been that people change in life. I found myself having to mould aspects of my personality into a different shape to better accommodate the challenges that I was now faced with. The treatment is gruelling; I constantly surprised myself with how much I could withstand. Chemotherapy, surgery, the feeling that death was always just a few steps behind me. I found a way through it all, but the journey wasn’t smooth. Support from friends and family is essential, but even that wasn’t always enough.

It is difficult to unload your true fears and compulsions onto people so close to you. They are going through it too. In some ways, it is harder for them, as they have no control over the situation. Sometimes, they are pedestrians, standing idle on the side line whilst you face obstacle after obstacle – the pain, fear and devastation which you become accustomed to, but that they never quite understand the extent of. The unknown can be more dangerous to the individual as it presents an inexhaustible amount of horror; friends and family can be locked in limbo, whilst you travel the length of your mental capacity, in search of something to keep you going, no matter how bad things get.

This is why the AYA community serves as such an important tool for people like me. Something that you are commonly told when you are young with cancer is that it “should not be happening to you.” Why wouldn’t it be happening to me? Why not now? Sometimes we draw the short straw, and there is no reason as to why. When I was first diagnosed, I wondered what I did to deserve this. Those thoughts do little to comfort you, and when you must deal with the reality of having cancer every minute of every day, you don’t benefit from having a victim complex about the situation. Stuff happens in life and sometimes, that stuff happens to suck for you in particular. It isn’t easy to keep that level of clarity all of the time, but it is a helpful tool to lean on when going through a hard time, whether that is physically, mentally, or both.

Conversely, there are still people that meet the news with a strange callousness that I don’t understand. The people who hear that you have cancer, and respond by saying “you’re young and healthy, you’ll be fine.” I’m just glad that these people don’t tend to be oncologists, because I think the death rate among AYA cancer sufferers would be far higher if the consensus was that anyone young is invincible and, thus, will be fine. One of the first things I read after being diagnosed with my cancer was that people who are diagnosed with it seldom live to the 5 year mark from diagnosis. No one can prepare themselves for something like that, and to fall back on the notion that age guarantees survival would be careless. Optimism is a powerful tool, but naivety can be destructive. Sometimes, facing up to the reality of the fight at hand helps an individual to push their limit further.

AYA charities provide a space where young people with cancer can speak and relate to each other. In my experience of joining support groups of all ages, where many attendees were over 60, I left feeling more isolated. It reinforced a feeling that what was happening to me was unjust. AYA reminds you that you are rather unremarkable and that there are others experiencing very similar feelings to you. It makes a huge difference.

Further to this, many cancer charities are set up to support a traditional person with cancer, but not anyone else. I commonly find opening hours of charities to be Monday – Friday, 09:00 – 17:00. Although I understand why this is, it isn’t helpful having a workshop or support group in the middle of the day. I’m not retired, and I can’t afford to be signed off work forever. The AYA charities are better equipped for this, and I have attended many evening sessions with them, where I am not so constrained, and having to beg for time off in the middle of the day to attend an event.

Despite all of this benefit to young cancer sufferers, AYA charities go relatively unnoticed. Because of this, I wanted to write a piece on how much I appreciate their existence, and how they have helped me through some tough situations. In the UK, I have attended a few Shine events, and am looking to join their summer meet up in London now I am living back here, and in the US, I have had multiple pieces printed in Elephant & Tea’s magazines, as well as joining some very interesting events which they run; some of the stories I have read in their magazines have really resonated with me, and I find myself going back to read them frequently.

So, although you may not be an AYA cancer sufferer, I’m sure you have experienced the negative effects that cancer can have on an individual, whether they fall within the AYA category or not, and on the people around them too. In future, if you are looking to raise money for a charity, consider seeking out one of these smaller AYA charities and doing it for them. I know that they’ll really appreciate it, and you’ll be contributing to a service which makes a huge difference to people like me.

On… Ennui

There is a popular saying which states that ‘only boring people get bored’. I’m assuming it is popular. If it wasn’t, I doubt I’d have heard of it, but I can’t seem to attribute it to anyone in particular. Boring people presumably do get bored, but I think other people might get bored sometimes too. I’ve felt bored loads of times. Am I a boring person? Maybe.

When I’m bored, I like to find an over complicated word to describe something commonly referred to by another name, then drop it into conversation with someone, and act stupendously shocked when the unsuspecting party does not know what it means.

“What does ennui mean? Why it means ‘bored’, of course! You should read more; you’re falling behind my level of repartee [banter]!” There’s nothing like talking down to a close friend or family member for your own amusement, and the experience will pay dividends in keeping you anti-bored. You can think about it for days, weeks, months, even years. You’ll laugh to yourself, thinking, “Oh I got them so good that day. I wonder what they’re up to now? They don’t really speak to me anymore. Come to think of it, no one does.”

Boredom is the modern day plague, being passed from indifferent subject to indifferent subject. Our toxic boredom leaves us believing that there’s nothing left on Netflix that is worth watching, that our phone’s limitless capability is incapable of keeping us entertained, and allowing quick-fire apps like TikTok to flourish, because it removes the inconvenience of ‘thinking’ and ‘focusing on a single thing for more than 30 seconds’. We can’t even be bothered to have a favourite news outlet anymore, so we let social media tell us what news articles to read. Gone are the days of ‘journalistic integrity’, whatever that means. It’s all about clicks, clicks, clicks. Loyalty is just an archaic word now. We just open whatever is thrown onto our newsfeeds, moving seamlessly from one to the next, allowing the algorithm to dictate what we do next. One minute you’re reading about the Kardashians and how they wore clothes to something, the next you’re in the bowels of an extremist apologist page, finding yourself agreeing with the discourse, yet not realising that you’ve slowly been inveigled [persuaded].

We trust the algorithm of social media websites so sincerely that it is a shame it is a faceless, lifeless entity. We’d probably rather be friends with that than most of our real life friends; definitely our family – we don’t even get to choose them, so we’re bound to not like them. Besides, the algorithm takes time to learn what we like. Damn, it even tells us what we like. Over time it actually decides what we like, and it is far more adroit [skilful] at figuring it out than we could ever be.

But we like that, don’t we? I don’t have enough time to decide what I actually like in life anyway, so I’d rather let AI do it for me. That way I can dedicate more of my time to having nothing to do. I can maximise my boredom even more efficiently if I start to ask Chat GPT to write my blog posts for me, then get it to answer the comments from the community too, then hopefully, in time, it will attend my family Christmas meals for me, and make friends with my colleagues, and even do my work. In the future, it might even be a good husband to my wife for me, freeing up even more time for me to do absolutely nothing. I’ll have so much time to be bored – it’s going to be terrible. I can’t wait!

Boredom is promoted in our society, as the antidote to boredom is buying more things, going on more holidays and disliking others more for being less bored than you. That creates an environment where evil can flourish, the type of evil that is above boredom, and is ready to pounce on those negative feelings. Sure, we can eat grapes all year round thanks to globalisation, but that isn’t enough to feel happy, is it? No – we’re bored of all of that. Yet, while we sit bored, Putin is invading Ukraine, Amazon is the only company left in the world and James Corden still has a career, despite being a despicable human being who would pander to an autocratic psychopath if it would advance his career in any way possible. Avarice [greed] is held in high-esteem, whilst being satisfied is looked down upon, as if one is never supposed to feel content with what they have.

Yet even I, with my erudite [learned] understanding of ennui [boredom], occasionally fall into the trap. I’ll be sitting at home, too tired to read and the evening still too young for me to go to sleep, and I’ll think to myself – “isn’t life boring?” I wait for a response from the universe… nothing. Knew it; that would be too interesting. The mind can enter a free-fall mode when it is in this sort of defeatist mood. Everything reinforces that negative feeling; you message a friend to see what they’re doing and they don’t text you back for 30 minutes… well they obviously despise you and think you’re boring and don’t like you and are probably sat talking to someone about how annoying you are right that very second. You get off the sofa and try to cook something, but you’re out of that one spice that you need… so you plan on going to the shop, but the shop closes in 20 minutes. Besides, they never have that ingredient anyway – they’re always sold out of it. You’re always walking up to the shelf just as the last one is snatched up by someone better looking than you, right in front of your very eyes. Then you hate them for taking it, and for being better looking than you. They probably never get bored.

But there are people in the world who have a curiosity which pays dividends. Simple things can deliver a world of intrigue and pleasure, if allowed. For me, I like to find interesting words and write them down in the Notes application of my phone. I’ve got a long list of interesting words, with a short definition next to each, so I can trawl back through them when I’m sat around drinking my coffee in the morning, and recite the ones that I particularly like back to myself. Sometimes the sound of a word is pleasing, such as the word ‘vexatious’, which is defined as ‘causing or tending to cause annoyance, frustration, or worry’. Other words have a pleasing definition, such as the word ‘syllogism’, which is defined as ‘an instance of a form of reasoning in which a conclusion is drawn from two given or assumed propositions’.

(Vexatious actually sounds cool to say AND has a pleasing definition, but I couldn’t squander an opportunity to use ANOTHER word as an example).

Well, I am declaring war on being bored. My promise to myself is to never be bored again. Not by burying myself in social plans and never being alone; no. I’m going to become a master of being alone. I am going to abandon my loquacious [talkative] nature, which demands that I seek out large groups of friends and make them laugh until their jaws hurt (which I am an expert at on my good days, honestly). I’m going to watch paint dry for so long that I am engaged in it’s story, like watching Breaking Bad, or the first 5 seasons of Dexter (and strictly no further). I’m going to read the dictionary for fun – riding the pages like a rollercoaster, until I slam the back page closed and wonder where the time went. I’ll read the dictionary with such enthusiasm that my sobriquet [nickname] will be ‘Dictionary Dan’! My dictionary will be my closest confidant, never to be read sub rosa [in private].

Diabetes for Dummies

The ‘for dummies’ brand is a series of books which aims to make a plethora of topics more accessible for the average Joe. They present information in a logical format, breaking it down into meaningful parts which build on each other. For example, in my old job, I had to learn the database querying language SQL. I got myself a copy of SQL for Dummies, and found it very helpful in learning the basics of the language, and it is the closest that I have ever been to being proficient in another language. It’s a shame that the only thing it allowed me to communicate with was a database, rather than people from other countries. I didn’t achieve a level of proficiency where I was dreaming in SQL either, so I don’t think I ever crossed the threshold into being considered a ‘native’ speaker. Damn, did I query some databases, though.

I haven’t directly discussed diabetes too much in the blog so far. As I sat flirting with the idea of doing so, the thought came to me about the ‘for dummies’ book series, and how it would be fun to write one for diabetes. Well, lo and behold, they’ve already got several books on diabetes, including – ‘Type 1 Diabetes for Dummies’, ‘Diabetes for Dummies’ and even ‘Diabetes Meal Planning & Nutrition for Dummies’. They are prolific. If you are looking for a truly informative experience, I would highly recommend going for one of the official books. If you would like the Dan-ified, ‘woe is me, I had pancreatic cancer’ version, however, you’ve come to the right place. Pull up your socks, grab a drink of sugar-free water and let’s begin.

It’s always nice to start discussing a topic with a little anecdote, so let’s start there. Having diabetes could have won me some money, if I was a betting man. When I was younger, a few of my good friends decided to host a wager. All of them were eating a lot of chocolate and drinking a lot of sugary drinks at the time. In this coterie were two of my best friends, Luke and Dave. For example, Luke enjoyed buying 2 bottles of Lucozade at lunch (they were 2 for £1.50, or something like that) every day, and using that fluorescent orange liquid to help digest a Boost bar, which might be the sugariest chocolate snack on the market. This common habit of consuming an eye-watering amount of sugar every day led to a disagreement in the group. None of them could decide who was going to get diabetes first. To settle it, they all decided to pledge £20 each, and whoever got diabetes first would win all of the money.

If you’re now thinking that this isn’t very much money and it sounds a little stupid, you are correct. It is very stupid. I opted out, as I actually wanted to keep my money and not get diabetes. I hoped that any bad eating habits I had at that time were me living out my young years to the fullest before I was forced to follow a stricter diet due to my metabolism starting to give way to my age. Well, look how that turned out for me. I was indeed the first to get diabetes, and it was totally out of my control. The jury is still out on who is going to win their competition, but I’ll be the first to laugh when it does finally conclude. They’ll have to give the winnings straight to me to get an early edition of my book, ‘Living with Diabetes for Idiots Who Bet Against Their Own Health’, which I will be holding back on releasing until after their contest is concluded, so I can charge the winner an excessive price. It won’t be winning any Nobel Peace prizes, so I may as well hold onto it until then.

Let’s start with the basics… Insulin is a hormone which is produced in the pancreas by pancreatic beta cells. Easy, right? No, you’re right, I don’t really understand what that means either. Basically – cells in the pancreas create, store and release insulin. When the body detects that the level of glucose in the blood is increasing, the beta cells release insulin, which causes glucose to transfer from the blood to the cells in the body. The body’s cells need glucose for energy. If the glucose levels in the blood are too low, the subject experiences symptoms such as light-headedness, sweats and ‘jelly-legs’. If the glucose levels in the blood are too high, the effects are less severe in the short-term, but especially high glucose levels can lead to symptoms such as headaches, excessive thirst and even vomiting. In the long term, consistently having high blood-glucose levels can cause severe issues, though, such as blindness, and can result in limbs needing to be removed… Not fun.

Consuming carbohydrates causes blood glucose levels to increase, necessitating the release of hormones such as insulin, which then encourages the glucose to transfer from the blood and to the cells. How on earth healthy bodies manage to do this so seamlessly is totally beyond me. Only when you are manually managing your blood glucose levels do you realise what an absolute pain in the arse this process is. Nearly everything changes how the body processes carbohydrate – the temperature, how stressed you are, the amount of exercise you have been doing, whether you are ill, how many goals your favourite football team scored last night (that last one may be a joke, but if it increases the level of stress you are feeling, it might actually be applicable). Yet, healthy bodies just sort it out. I, however, am left trying to account for a million factors that I do not understand, whilst also trying to eat as much dessert as possible, and feeling forty times more bad about doing so because I know that it is just going to make my night harder, as my blood sugar peaks and troughs, causing the alarm to go off repeatedly on my phone, and waking me up every few hours. I’m complaining again, aren’t I? Sorry, back to the hard hitting facts (which are under-researched and prone to error).

Type 1 diabetics are reliant on insulin to moderate the glucose levels in their blood. Type 2 diabetics are not, but have to adjust their diet to help control it. There is also a little-known third category of diabetic who walk this earth – Type 3c. The NHS do not recognise this as a distinct category, so they are commonly lumped in with Type 1s, because both are reliant upon injecting insulin, due to the body not being able to naturally create it. The politically correct term for a person who relies on injecting insulin is ‘Insulin dependent’; this avoids offending anyone. I am actually a Type 3c diabetic myself, so I know how it feels to be part of this stigmatised community who are not recognised by the NHS, and who have no rights under The Geneva Convention of diabetes.

The difference between type 1 and type 3c diabetes is the following. Type 1 diabetes usually occurs due to an autoimmune reaction where the body identifies the insulin-creating cells in the pancreas as the enemy, and proceeds to attack them until they’re mostly dead, leaving the subject unable to create, store and release the hormone anymore. See all that praise I gave to the healthy body earlier for being able to regulate blood glucose levels so effectively? Well, guess how much praise the immune system is getting? Nada. Do your job and do it properly!

Type 3c diabetes, however, is caused by damage to the pancreas. In my case, that damage was done by removing the pancreas entirely, so I would say that the definition doesn’t really go far enough to cover what occurred; sort of like an individual claiming that they will paint your walls, but then proceeding to plant explosives in cans of paint all around your house, and detonating them all at once, ensuring that paint did indeed go on the walls, but failing to mention that those walls would no longer be standing. You feel a little hard-done by re-reading the definition, and you wonder if it does justice to the events. Anyway, I digress.

If you’re wondering what Type 3 diabetes is (without the ‘c’), I truly have no idea. I’ve tried to read about it before, but it seems to be touted as an early sign of alzheimer’s, although I’m not sure if that is proven or just a theory. None of it makes much sense to me. Does it mean that I am likely to develop alzheimer’s disease at a statistically early age? I have no idea. Let’s hope not. This blog has already shown my proclivity to focus on the negative, so I could do with less things to worry about if possible, not more. Thanks.

So, what does it mean, having to regulate the body’s blood glucose levels yourself? These days, there is some pretty incredible technology around to help. I have a circular device in my arm called a Dexcom which monitors my blood glucose levels. This type of system is called a Continuous Glucose Monitor (CGM) system, as it continuously sends readings to an app on your smart device. If my blood glucose levels are going too high or too low, it sends out an alarming (and sometimes embarrassing) noise to warn me, allowing me to correct it by either injecting insulin (if it is too high) or consuming sugar (if it is too low). Sugary drinks are the best way to get the blood sugar up again, as it reaches the bloodstream quicker in this form. Sweets like jelly babies and fruit pastels are good too. Anything that only contains sugar is best, as if it also contains a lot of protein and/or fat, it will take longer to break down and extract the sugar. The same applies to starchy carbohydrates, like potatoes and bread. Although these things contain sugar in the form of carbohydrate, it is processed in a different way to less complex carbohydrates, as the sugar is mostly extracted in the small intestine, rather than during digestion in the stomach.

The game of keeping your blood sugar in the correct zone is akin to playing the old game Flappy Bird on your iPhone. If you don’t know, Flappy Bird was a game released on the App Store in 2014. It took the world by storm, and everyone was obsessed with it. The objective was simple – you are a bird, and when you tap the screen you flap your wings, causing you to rise slightly. If you didn’t tap, you fell again. In the game, you were flying along horizontally, and there were various green pipes that would appear from the top and bottom of the screen, so you would have to either tap the screen the right amount of times to fly over the pipes, or moderate your tapping to dip below them, depending on which part of the screen they were appearing in. Well, with your CGM, you are essentially doing this, but instead of it being a fun game, it is integral to your health (it is a little bit fun in a strange way, though).

The Diabetic’s ‘Flappy Bird’ – Screenshot from the Dexcom Application

Keeping your glucose levels between 4 and 7 is considered ‘perfect’ control, if you can keep it there. My 90 day average, according to my Dexcom app, is 7.7, which I’m very happy with. I’ve heard some people say that they strive for an average of around 10, and others who try to keep it in the ‘perfect’ range. I believe if your average is as high as 12, that is where you may face problems in the medium-long term. I try not to read about it too often, but I believe it is in this region where blindness can become an issue, as the blood vessels in the eyes are very delicate, and having high levels of glucose in the blood can damage them.

My 90 Day Averages

Different people feel the lows at slightly different numbers. Personally, I don’t start actually feeling any effects until I’m as low as 3. Some people are quite sensitive to them I believe, and will feel off as soon as it hits 4. On the few occasions that I’ve not had a CGM device in, and I’ve had to test my finger to manage my insulin levels, I would start feeling light-headed, prick my finger and wipe the blood on the testing strip in the small glucose-reading device then, to my horror, find out my glucose level is at 2.7. It has shocked me a little bit, as I rarely see my levels go that low, and I start getting paranoid that any second I’ll pass out. But I’ve never had an event where I’ve gone unconscious, and will aim to keep it that way for as long as possible, if not for my entire life.

Low blood sugar is particularly dangerous, as it leads to the patient passing out far easier than the blood levels being high, as far as I am aware. This occurs due to the cells in the body not having enough energy. The opposite, where your blood sugar is very high, can also lead to the subject going unconscious, which I didn’t even realise until recently; I thought you could only go unconscious from low levels, but apparently if it gets very high, you can pass out from dehydration. The more you know, the more you wish you didn’t have to…

It is worth knowing the symptoms of low or high blood sugar, as it may help you save someone’s life. Low blood sugar can lead an individual to seem drunk – they will appear drowsy, shaky, weak, sweating, and may struggle to speak. High blood sugar is a little different and probably harder to tell from any external physical symptoms – the patient may feel the need to drink a lot, feel tired, get headaches, experience nausea and vomiting, and develop stomach pains. Quick action is essential if someone falls into a diabetic coma, or is on the verge of falling into one. That is why you should take it seriously if you see someone who looks visibly impaired in public, and not simply dismiss them as a drunken idiot. Pay attention to their wrist and see if they have any sort of medical band on, which identifies them as having diabetes. Falling into a diabetic coma is very dangerous for someone with diabetes, and will result in death if it is not urgently treated. Knowing these things can save someone’s life. If they are still awake enough, encourage them to drink something sugary, like fruit juice or Coke. Make them drink about 100 – 150ml of the liquid, that should be sufficient. If they are already unconscious, call an ambulance immediately.

Anyway, back to the less serious stuff. My new favourite pastime since becoming a Danabetic is finding low sugar drinks that I can enjoy, that are not full of total crap. When you look on the side of a Coke Zero can and it claims that it has 0 of anything in it, you have a right to be suspicious. Trip is a good brand, and has the added benefit of containing CBD. The Elderflower Mint flavour is amazing, but I cannot taste an iota of elderflower in it; it is all mint, which is fine with me. Another good brand is Punchy, who do a Blood Orange, Bitters and Cardamom flavour which is TO DIE FOR. Blood orange is so underrated as a flavour.

I also enjoy Kombucha drinks, and they are usually very low sugar too, but I’d say it is a more controversial flavour, and one that some people really despise. I used to despise it, but then my life got flipped-turned upside down a la Prince of Bel-Air, and low sugar drinks became more of a prerogative to me, so I forced myself to try it more. Lo Bro’s Passionfruit flavour is a good one, if you are looking to get into kombucha. It is quite vinegary, which doesn’t sound appealing, I know, but it’s very good for you, and the perfect drink if you are northern and want an excuse to drink vinegar.

None of these drinks are particularly cheap, I know, but considering I hardly drink alcohol anymore, and they are all low sugar, I think it is worth it. If you are trying to reduce the amount of alcohol you are drinking, or just want some exotic drinks to dive into in the evening, I’d recommend all of the above. Now, one last point, then I’ll wrap this up.

Since being diabetic, I have felt more of an affiliation with mothers who have to breastfeed in public. Stay with me… On the tube, I occasionally have to inject insulin due to my blood sugar going high. I’ve done this a few times on the way into work, when the train is absolutely rammed and I barely have enough room to maneuver the pen into my stomach. Usually, as I pull the pen out of my bag and attach a needle to it, I see people inquisically trying to watch, whilst also trying not to seem rude. Sometimes, they don’t care about seeming rude at all, and they just stare at me, trying to figure out what I am doing. One time, a little girl who was sitting next to me asked me what I was doing. I told her that I was diabetic, and that I had to inject insulin to keep me alive. Her dad then apologised to me and told her to leave me be, but I actually found the whole interaction quite sweet.

It makes me think of mothers having to breastfeed in public, and how they also probably monitor the reaction of those around them. I am also aware it isn’t actually akin to the experience, and that the act of breastfeeding your child is a far more intimate act than shoving a needle into your belly, but you know, I am one step closer to knowing what it feels like. I stand with you, breastfeeding mothers in public, and know exactly what you go through every day. We should link up and start an advocacy group – I don’t mind being president and mansplaining our grieves to anyone who will listen. Consider this my application.

So, there is volume one of Diabetes for Dummies. Hopefully you’ve learnt something and, if not, well done, you know a lot about diabetes already, and probably listened much more attentively in Science than I did. I’m coming up to my 1 year anniversary since being diagnosed, and feel like I’ve come a long way in that time. Initially, I found it all really hard and scary to get to grips with, but it does start to get much easier. You become more confident in your decisions, and more in control of the overall situation. I could write another 400 posts about the lack of support for those first few months, but I’ll save that for my next release, ‘Fighting Diabetic Authority for Dummies’.

Waitin’ Round to Die; Anticipating More Scan Results

The Road to Recovery

I tried to kill the pain, I bought some wine and hopped a train
Seemed easier than just waitin’ round to die

Townes Van Zandt is widely regarded as a veteran of American songwriting. I don’t listen to a wide variety of his music, but I’ve loved ‘Waiting Around to Die’ since I first heard it years ago. I remember being taken in by the finger-picked guitar and grimy lyrics. It is one of those songs where the whole is greater than the sum of its parts. You can learn and play the main riff on your acoustic guitar, but you can’t make it sound as good as it does on the recording for some reason. I feel similarly about Bob Dylan’s song ‘Don’t Think Twice, It’s Alright’. That song is also primarily made up of a picked acoustic guitar pattern and a vocal, and is equally as difficult to play to the standard of the recording. Both songs are tantalising in their delivery.

One of the first things I did after hearing the song was looked into the background of the artist. The lyrics in the song are so painful that I wondered just what went on in his life that made him write such heart-wrenching words. I think the Wikipedia page dedicated to him best summarises his ills under the ‘Personal Life’ section – ‘Relationships’, ‘Addiction’, ‘Death’. He was married several times, struggled with addiction throughout his life, and, if the lyrics to Waiting Around to Die allude to anything, seemed to have an unhealthy fixation on death.

The song is so poignant and powerful that I remember seeing a live video of him performing the song, whilst a man watching in the background sat crying through the performance. It made me feel a little inhuman, and like I lacked empathy. The song evokes quite a different reaction from me. I find myself listening to it sometimes to remind myself that things just aren’t that bad. “At least I’m not feeling negative enough to write ‘Waiting Around to Die’,” I’d think to myself on those days where I find myself struggling. If I ever think I am at a point I could write a song like that, I would be very worried about myself. It is so grim in its outlook that it almost paints a caricature of just how painful life can be, and how downtrodden one may feel as a result of it. Although it provides the right environment for a fantastic song, it doesn’t seem to provide the conditions for a healthy and happy life.

One time I will agree that I feel like I am waiting around to die, though, is when I have to wait for scan results. The next set of scan results are particularly important as they are the ones which will vindicate me of all cancer treatment moving forward, should they come back clear. If the news tomorrow at the 14:00 meeting at the hospital is that there are no signs of cancer, I will be hospital appointment-less (not yet a term recognised by the Oxford English Dictionary) for the first time since being diagnosed in November 2021. It will also be the first time that I will not have any more treatment on the horizon and will be considered ‘cancer free’ (also known as ‘Under Surveillance’, but I prefer the phrase ‘Cancer Free’).

Today I went to do the pre-results meeting blood test. I must admit, I had a spring in my step. I’m trying my best not to assume that the scan will be clear, but I can’t help but fall victim to the prospect of hope. After a really tough month of treatment, I am finally feeling my health start to improve again. My head isn’t so cloudy in the mornings, I am managing to eat without feeling sick most of the time, and I’m finally starting to go on daily walks again; I’m having to build the distance up slowly, but am managing to comfortably do 30 minutes most days. It is crazy that this is the standard of fitness I now measure myself by, considering I used to frequently run 50 miles in an average week, but that emphasises the toll that cancer treatment has on your body. I’m probably still recovering from the surgery in many ways, and my blood sugar occasionally has its days where it throws all of its toys out of the pram and decides to be a nuisance all day, constantly going high or low, and refusing to get in line.

Despite reminding myself that there is no certainty that the scan results will be clear, I walked into the hospital feeling like I was exhausting a tickbox exercise more than I was undergoing something determining my fate. The signs are all pointing in the right direction – I had barely sat down in the waiting room after checking in at reception before my name appeared on the screen, summoning me into the blood room. As it popped up, I looked around me to make sure no other Daniel James Godley’s were standing up. It was just me. I made my way down the white corridor and knocked on the door.

One of my favourite nurses opened it, much to my delight. When you have had approximately 4 million blood tests, you start to understand the difference between a ‘good’ one and a ‘bad’ one. The good ones entail an uncomfortable prick of the skin, a minute of relative discomfort followed by a small shudder as you feel the needle being pulled out and replaced by cotton wool being pressed against your skin. The bad ones entail a wrench of pain as the needle is pushed too deeply into the arm, followed by a minute of gritting your teeth as an unsteady hand vibrates the needle, switching between the few vials of blood used during the extraction, followed by a twinge of pain as the needle is jolted back out. The good ones don’t leave much of a mark; the bad ones can leave a deep bruise for as long as a week, and can even leave your arm hurting when you fully extend it. One time I could barely move my arm for 3 days because it hurt so much after a particularly bad blood test. This nurse was firmly in the ‘good’ category, which makes the whole experience far more pleasant.

The deed was over quickly and with relative ease. As I sat there holding the cotton wool on my arm to stop the bleeding, another one of the nurses came in, who I also had a good relationship with. She had counselled me a few weeks earlier as I sat with my head in my hands during treatment, complaining that I couldn’t do it anymore and that I was feeling too overwhelmed. She had spent a good 10 minutes sitting next to me, encouraging me to fight on and reminding me of all the good things in my life – my wife, my puppy and my new found love for baking; the nurses particularly enjoyed the spoils of that last one.

“Dan! How are you doing? Are you feeling better?” She asked, as she picked up a few vials of blood and put them into bags.

“Much better thank you. I’m finally starting to recover from the treatment,” I responded. I then made reference to the blood nurse being one of my favourites. During my response, I said what I thought was the blood nurse’s name, which I immediately regretted, as I got a streak of insecurity in my head as the word came out of my mouth.

“Was her name ‘Aileen’?” I thought to myself, as I said ‘Aileen’. Something didn’t feel right about it. Her name is actually Elaine, which I confirmed by looking at her name badge in that exact second as I uttered the wrong name, so I wasn’t far off, but I still felt horrifically embarrassed. This particular nurse had asked me how my son was two weeks earlier, and I had to tell her that I don’t have a son, so that does make me feel a little better. No one mentioned that I had gotten her name wrong in this situation, though, and I wondered whether to make a joke of it. The moment had passed, and the conversation quickly moved on. It seems we are drawn 1 – 1 on awkward social faux pas – I got her name slightly wrong and she thought I had a son. Luckily, this should be the last blood test I have to do for a few months, so she won’t get the opportunity to punish me for a while. Hopefully, by then, she will have forgotten.

Now, I have a long 24 hours of waiting before I find out the full scan results. It is always painful being at the hospital waiting for scan results. The oncologists at The Christie are overprescribed with the number of patients they have, and there are almost always significant delays with the face to face appointments. As a result, you arrive for a meeting at 14:00, but frequently find yourself not being called into a room for at least an hour, if not longer. Then, you are taken into a room where a nurse takes your observations – blood pressure, heartbeat, height, weight – before being asked to wait for the doctor. That can entail another hour of waiting, only in a private room. Every time you hear footsteps approaching the door, your breath deepens and your heart sits in your mouth. Then you watch as a person walks past the room, and you let out a big gasp of air, before repeating the whole process again and again and again before you finally hear that fateful knock. It is painful – I’m not sure I’ll ever get used to it.

Perhaps the universe was trying to send me a message when Waiting Around to Die came on one of my Spotify playlists this morning as I made my way to the hospital to do bloods. I sat listening to the lyrics, and it oddly made me smile. I thought about myself waiting around at the hospital, straining over every minute that my name didn’t appear on the screen, summoning me into the office to learn of my fate. I thought about going through the whole process tomorrow when so much is at stake. If I am clear of any signs of cancer tomorrow, I can start to plan my move back to London, start seeing friends and start making concrete plans again.

There are so many simple things in life that we take for granted when we are healthy. Over the past year, I’ve barely been able to plan beyond the next 7 days with any certainty. There is always the chance that you’ll have a bad day or week on the chemotherapy, or that a scan will reveal some new devastating truth, which you’ll then have to contend with; whether that means more treatment, or that no treatment will suffice to save you, it carries with it an enormous weight. To have that weight lifted seems almost… unfathomable. I cannot wait to finally fathom it.

Of course, then I’ll have to attend these scans every 3 months for the first 2 years. After that, it’ll change to every 6 months. Then, if I make it all the way to 5 years without a reoccurance, it will change to once a year. That is a fairly daunting prospect, but I’ll have plenty of life to keep me busy in between. That is all we can really do with our free time – look to stay busy, finding things that best occupy and satisfy us. I’ve been writing a few special pieces recently that I’ve been really enjoying; I’m going to keep writing and see where it takes me – hopefully, as my energy grows and I feel stronger, I’ll find even more energy to put into it.

Still, I have another 24 hours of waiting to go before I find out what the scan results say. I’m getting ahead of myself and assuming the scan results will be positive again… Perhaps I will try and cook something nice tonight, or bake something to give to the oncologists tomorrow – they can’t give me bad news if I bribe them, can they? Whatever I decide to do, I need to do something. It is all better than waiting around to die – right?

Mouth Ulcers and The End of Chemotherapy

The Chemotherapy Diaries

Bedbound and Down

I thought I’d left my abusive relationship with mouth ulcers in the past… the mouth ulcers had another thing in mind. They decided to come back in force and ruin my victory lap week with the mop-up treatment. Rather than being excited about reaching the end of my journey with chemotherapy, I spent the past week in bed, struggling to eat, and even struggling to talk.

The issues started last week on Monday. It seems strange how they form, and I’m not sure if they form differently on chemotherapy, or if I just haven’t had enough in my life prior to being on treatment for cancer to know, but it seems to be different to how I remember it. I know I’m about to get mouth ulcers because my mouth just starts feeling strangely sensitive. All of a sudden, a hint of paprika in a tomato sauce results in my cheeks and tongue feeling hot and irritable. I’ll sit there after the mildest of chilli meals and find my mouth pulsating with discomfort.

“I think more mouth ulcers are coming,” I announce to my wife, with a combination of bitter amusement and familiar disdain. The sentence sounds like a naive plot thread in a horror movie, where the protagonist announces that they’re happy that they live in the safest town in their country, minutes before a gang of weapon-wielding maniacs descend on it with masks on and a vengeance against middle-class bullshitery. In my case, I use the word ‘think‘ as a sign of optimism that perhaps the ulcers won’t materialise, and that my mouth may just be a little sensitive that day. Usually, I wake up the next day to find that optimism to be entirely unfounded, and the ulcers have spread themselves throughout my mouth in the most awkward and painful of places.

This time was particularly bad, though. I couldn’t even drink water from Tuesday to Friday without it causing my mouth to sting so intensely that I’d question whether the government had replaced the local water source with hydrochloric acid. It was Thursday night that I decided to finally call The Christie hotline and report the problem to my oncology team. I was still taking the chemotherapy tablets twice a day at this point and had been for my last infusion on the Tuesday, when it had all started to kick off, so the chemotherapy was rife in my system.

Before the final infusion, I reported the problem to my nurse during the standard pre-treatment survey. She had manoeuvred one of the large extendable lights attached to the wall behind the bed into a position to investigate the contents of my mouth.

“Oh, the back of your mouth is very swollen. Your tongue looks very painful too. They are rather excessive, aren’t they?”

“Yeah. I’m struggling to talk because the ones on my tongue are constantly scraping against my teeth towards the back of my mouth. Opening my mouth is hard because the ones at the back of my cheek strain when I do.” You’re probably reading those sentences in too normal a fashion for how I was enunciating my words at this time. Imagine someone with a lisp who, for whatever strange reason, also can’t open their mouth properly, reading the sentence to you. Looking back, it makes me laugh quite a lot, but I didn’t see anyone laughing around me at the time. What a waste of a painfully funny situation. Another rather funny event that occurred during my final infusion was me receiving a foot massage.

I’d had a minor breakdown at treatment during my first session of the final cycle, and the nurse had referred me to the hospital’s Macmillan team. The next week, during session 2, one of their specialists had come to visit me to talk me through techniques to implement when I’m feeling overwhelmed, as well as services that her team can offer to patients. One of these services was a foot massage during treatment, which is said to help lower the effects of nausea, which I was experiencing in abundance during my sessions at the hospital.

It wasn’t actually the treatment itself causing this, but the smell of the ward. I think it has finally happened that I now associate the smell of antiseptic cleaning products with the horrible effects of chemotherapy, and the experiences familiar to me during the delivery of treatment at the hospital. These include, and I apologise in advance for the amount of toilet-based issues listed, but it is the reality of being on chemotherapy: chronic diarrhoea, blood in my faeces, throwing up whilst sitting on the toilet, sweating profusely, the room spinning around whether my eyes are open or not, going white as a sheet, and my extremities freezing solid, so I cannot bend, or even feel them, which is incredibly painful and irritating.

I declined the foot massage that week, stating that it was a nice gesture but that I am nearly at the end of my treatment, and that I’d made it this far without them, so I’d soldier on. The Macmillan representative was so lovely. She encouraged me to accept it and said that it is really therapeutic, but I felt far too English and awkward about the whole thing. Also, my feet are the part of my body that I am most self-conscious of, as I used to run a lot of ultra-marathons, which isn’t usually indicative of nice-looking feet. Mine certainly fall into the category of ‘That guy likes to run marathons’, and I haven’t even run one for well over a year.

But, during my interview at the start of session 3, cycle 3, the Macmillan representative had come back to see me, and it just happened to be during the nurse’s inspection of my mouth.

“Other than the mouth ulcers, have you had any other symptoms that have been bothering you?” the nurse asked.

“I’m still struggling with nausea, and just generally feeling wiped out. I really struggle to get out of bed at the minute, and I barely leave the house at all,” I replied.

The nurse turned to the Macmillan representative and said the following:

“Do you think we can give him a foot massage to try and help his nausea?”

I’d been rumbled. Had these two planned this? What a deviant, awful, lovely pair of people. How dare they assassinate me with their good nature. How am I going to wriggle out of this one?

“That’d be great – are you Ok with that, Dan? I know you weren’t so keen on it last week,” the Macmillan representative said to me.

Both their eyes were locked on mine; I felt the weight of expectation.

“Ok, sure. That’d be lovely. Thank you,” I said, defeated, and still struggling to pronounce my words properly because of the mouth ulcers.

If you are on treatment and are offered a foot massage, I only have one thing to say to you – do it! The Macmillan representative used the electric remote on my chemotherapy chair to elevate my legs straight in front of me, then placed herself at the end of the bed. She put a lovely white towel under my feet and curved the ends of it around each ankle. She then proceeded to cover my feet in ACTUAL OIL, and softly massaged my feet, whilst chatting to me about everything that was getting me down – acknowledging the trauma that I have been through, the difficulty of the cancer that I am fighting against, and how hard it must be to readjust to my present life, compared to my old one.

The whole experience was absolutely wonderful, and it really put into perspective how important the work is that Macmillan do. What an incredible organisation and, in particular, what a wonderful individual she is. I wish I could shout her out by name in this post, but I’m not sure how ethical that would be, so I won’t. I hope this gets back to her somehow so she can read how much I enjoyed the experience, and how grateful I am for it. Anyway, this post has turned far too positive, lets get back to my week of hell with the mouth ulcers.

As I said, I spent Tuesday to Friday mostly in bed, consuming very little in the form of food or water, and struggling to do much more than sulk. Talking was very painful, and no amount of the hospital-issued mouthwash, or Iglu gel that I put on the ulcers to try and relieve them, was doing much to alleviate the issue. I was still taking the chemotherapy tablets throughout this time, but I was feeling incredibly weak and sick, and I decided it had all become too much. I’d taken to sleeping on the bathroom floor a few times during these 3 days as I was getting such bad abdominal pains and bouts of nausea, that I was worried I wouldn’t make it to the toilet in time from my bedroom if I stayed there. A few times, this proved to be a good idea, and I learnt that my favourite place in the upstairs bathroom was assuming the fetal position on a small rug placed in front of the radiator.

One time, I had been rudely woken up by my wife banging on the door, telling me that dinner was ready downstairs. Dinner? Can one not assume the fetal position on the bathroom floor in peace these days? Unbelievable. I can’t eat anyway – what good is dinner to me?

The Christie hotline wanted me to go into the hospital to be reviewed, as they were worried about a few of my symptoms. My temperature was 37.7, which is right on the border of ‘high risk’. A high temperature can be the earliest sign of infection, so patients are advised to regularly check their temperature whilst they are receiving chemotherapy treatment. The advisor was worried that some of my mouth ulcers may be infected. On top of this, the fact that I was struggling to consume liquids, and had been suffering from bad diarrhoea all week, added to their concern.

I was pretty sure that I didn’t have an infection, though. My theory about the high-ish temperature is that I was taking the reading using an oral thermometer and that my tongue and mouth were very swollen, which would probably be skewing the temperature reading. I didn’t feel like I had any symptoms of flu, which usually indicates that the body is struggling with fighting an infection, and none of the ulcers looked infected to me.

It was nearly midnight at this point, and The Christie is nearly an hour away from me. That would mean an hour to get there, a few hours there having blood tests done, and being put on routine fluids, and then another hour back home. If I was genuinely concerned that something bigger was going on, I would have been happy to do this, but I wasn’t convinced that it was. I gently refused and asked if I could arrange to see the GP the following day instead. The representative reluctantly agreed but said that she would call me back an hour later for another temperature reading, and if it remained the same or increased, insisted that I would have to either go to The Christie or to my local A&E to be checked out. The suggestion that I may go to my local A&E over The Chrstie made me giggle.

“If I need to go anywhere, I’ll come to The Christie. I’m not stupid enough to go to my local A&E anymore – I’ve made that mistake a few too many times over the last year.” That thought cheered me up momentarily. Who would voluntarily go to an A&E in the UK? They’re notorious hell-holes where, if you manage to get out within 5 hours of arriving, you feel like you’ve been blessed by the gods. At A&E you are treated like a problem; I’d rather book a plane ticket to be seen at The Christie than drive to an A&E that is 20 minutes away from me. The overall time it would take to resolve the issue would still fall in favour of The Christie anyway, even if it included navigating airport security, sitting through a flight, the awkward bag collection on the other side, then the mandatory coffee stop before leaving the airport. I once sat in A&E throwing up for 9 hours before speaking a single word to an actual doctor, and that was during my recovery from major surgery last year.

An hour later, my temperature was 37.4. Good, it was dropping. She was happy to let me stay at home, so long as I got an appointment the following day.

In the morning, The Christie hotline diligently called me to see how I was getting on. They had been far sharper than I had that morning, as I had had one of my typical chemotherapy mornings, where I could barely move a limb for how bad I felt.

“Hi, Dan. It’s the hotline here – we wanted to confirm that you have an appointment to see the GP today?” The advisor asked me.

I broke out into a thousand excuses, but the central point was – no, I didn’t book an appointment, and it was now 10:30, and all appointment slots will have probably gone. She asked me to try to get one, and then get back to them once I either had an appointment or learnt that I could not get one, so they could help to arrange an alternative.

Lucky for me, I called my GP and explained the situation, and they offered me a slot at 17:00, only available because a patient had cancelled. I assume that this patient had originally accepted the appointment, only to realise that it cut into their Friday night pub time, which had convinced them that whatever was wrong with them really wasn’t that bad and that it is probably normal for men to have dry testicles that are covered in flaky skin. No idea where that came from… you’d think I was projecting, but I promise I’m not… Anyway, I snapped the appointment up but was concerned that the advisor on the hotline would not be on shift anymore by the time I had seen the doctor, so I wouldn’t be able to report back the outcome of the appointment. Rather than proactively do anything about this concern, I returned to my position under my quilt, falling in and out of sleep until the fateful time came to attend the appointment.

The GP looked at my mouth ulcers and confirmed that none of them looked infected, but said he would give me some steroid mouthwash to encourage them to clear up quicker. He then looked at the results of a recent blood test I’d had at the GP, due to some standard screening procedures for diabetic patients, which I am.

“One of your liver functioning tests is rather high – are you a big drinker?” The GP asked.

I sat there stunned for a second before responding, trying not to sound too condescending or annoyed.

“Erm, no. I believe it is due to all the chemotherapy I’ve been on. I have pancreatic cancer.” I couldn’t help but be a little stern in my tone.

“Oh, of course. Sorry,” he responded, before talking to me a little about how the treatment was going, and how long I had left on it. He was a nice guy – it had probably been a long week.

The steroid mouthwash lasted for 5 days and seemed to do very little. My mouth ulcers are still going strong, though I am managing to eat more. Some recipes I’ve taken a particular liking to are overdone pasta with homemade pesto, a mild daal and, of course, soup – a classic ‘I’m ill and everyone should feel sorry for me‘ meal.

On a more positive note, I woke up today feeling better than I have in weeks. Instead of being greeted by a piercing headache and heavy limbs, I woke up at 8:00am and felt… kind of, Ok? I’ve gotten so used to the first feeling that I wake up to being anguish, as if I spent last night downing straight vodka from the bottle before being hit by a double-decker bus, that anything remotely more positive than this feels like a breakthrough.

In the Wet Leg song ‘Ur Mom’, there is a break in the song where the singer sings the following lines:

Okay, I’ve been practising my longest and loudest scream
Okay, here we go
One, two, three

She then proceeds to scream for an impressive amount of time. It is very random, fun, and the sort of tongue-in-cheek thing that you start to expect from their music after listening to a few of their songs (the song ‘Chaise Longue’ is a prime example of their lyrical good humour). I like to think, if I had written the song ‘Ur Mum’, I would have channelled my anger at mouth ulcers whilst producing that scream. It brings me some pleasure to imagine that was her inspiration as I listen to the song, but it almost certainly wasn’t.

So, to finish off this post – fuck you mouth ulcers, and fuck you, chemotherapy. You can both do one forever. I’m hoping that I am done with you for good, but live in trepidation that my oncology team will tell me that I have to resume taking the chemotherapy tablets until the full course is complete, which would mean another 5 days of tablets to come. I’m purposefully avoiding calling the hotline back to tell them that I’ve completed the course of steroid mouthwash given to me by the GP, as I am assuming they will advise me to now continue the course of chemotherapy tablets.

Can I just say “no” at this point? Will 5 more days of pills really stop whatever may happen from happening? I seriously doubt it. It would give my mouth ulcers more opportunity to thrive, though, and they only need half an excuse to kick off a violent party in my mouth. They’re still at it now, even after 5 days of steroid treatment. If anything, I think the steroids just encouraged them.

Who’s side are these oncologists on, anyway? I’m starting to think they’re funded by mouth ulcers.

I’ve told myself that I have to call the hotline this afternoon to talk about whether I have to resume the treatment, like a real adult. It is so hard not to ignore your problems when ignoring them does, kind of, make them go away.